Fatigue

[Hitara]

Hi there

I was diagnosed in August with heart failure and in October had a pacemaker and defibrillator fitted.

I am 47, have a husband, four children and two huskies so have always been very active. However I’m still really struggling. I sleep longer, I have no energy. My get up and go has got up and gone. I keep being told by the nurse that I just need to give it time. But I just want to feel normal again. Is this fatigue normal? It’s been five months! If I was employed rather than self employed I wouldn’t have been able to return to work.

[HarryBell]

Well some things may help, from my experience diet - removing alcohol and caffeine and adding an apple every day plus much more in the way of veg (get rid of sugar and most fat) has been really helpful. Plus regular and moderate exercise start with 10 minutes a day, aiming for 30 minutes could be good. Good luck and all the best.

[Hitara in reply to HarryBell]

Thank you Harry I’ve just been reading about alcohol so I think I will try to remove that from my diet. I actually have no desire to even want to walk or go anywhere. I’m veggie anyway and don’t have dairy but I’m also an insulin dependant diabetic. The latter has never slowed me down or stopped me from doing anything but the fatigue I’m feeling has just knocked me for six. Does anyone else suffer with fatigue?

[angedogs]

Hi Hitara

I was diagnosed with heart failure 4 years ago and had a CRT-D implant 3 years ago. To be honest I still get fatigued and I have more bad days than good ones but everyone is different and I don't think my condition is under proper control plus I also have other conditions such as Sleep Apnoea and Hypothyroidism that add to the fatigue. Are you on medication? I am on several different tablets and some, especially the beta blockers can cause tiredness so perhaps that's why you are so exhausted. Like you I am lucky in that I am self-employed so I can fit my work around my health but it has had quite an impact on my income.

[Hitara in reply to angedogs]

Hi, I’m sorry that you too are feeling it but I’m glad I’m not on my own. Yes I take lots of medication plus insulin for my diabetes. Thank you for commenting I was starting to feel like there was an underlying problem. It’s just so frustrating. My heart nurse just keeps saying give it a few more weeks.....how many times you can give it though I just don’t know. I was feeling quite down about it yesterday but feel a little more perky today x

[angedogs in reply to Hitara]

I am glad you are feeling a bit better. My heart nurses kept saying the same but for me it didn't get better. I do have good days as well as bad but the bad days far outweigh the the good. I think we have to listen to our bodies and not do too much on the good days otherwise it can affect us for days. For me the beta blockers are definite contributors to the tiredness which is why I have refused to have my dose increased.

[stevejb1810]

Unfortunately, fatigue is a common problem. There are a number of potential causes - diet, underlying medical conditions (excluding the obvious cardiac issue), your med cocktail. Have you had any cardiac rehab follow-up post implant? They are usually very helpful. If you feel you are getting nowhere, it might be your med cocktail - unfortunately there is rarely a one size fits all solution and it may be you need to have a look at this . It may take time to find the package that works best for you.

I fully understand the exhaustion and lethargy issues, but they can become almost a self fulfilling prophecy - the less exercise you do the more lethargic you become which means you do less exercise and so on. Really try and get out into the fresh air and walk - start slow and work your way up - the endorphins will kick in soon enough and hopefully you’ll start to feel better about things.

It can be a long recovery road but keep trying - it’s a marathon not a sprint.

I hope you start to pick up very soon

Steve

[Nanne]

Hi I was diagnosed with HF in 2013 having had a heart attack in 2011 caused by AF. The fatigue and learning to manage it is a roller coaster. I was very active before my heart attack so understand your frustration at trying to get back to normal with what is now not a normal body. I never did return to full time work and had to retire in 2012. Do you have a heart failure specialist nurse? I do hope so as they can really help to titrate your meds to the right level for you. As the condition is generally not stable it is an ongoing battle to get the levels right. Do be aware of the overactivity rest cycle and try to maintain an even level of acitivity. You will eventually establish what you can manage. learn to ask for help and accept gratefully that when people do jobs for you it may not be the way you do them but at least they are done.

The BHF have a very useful booklet on living with heart failure which can be got free from the website

Good luck and don't be hard on yourself. Listen to your body and on't overdo things

[laura_dropstitch Heart Star]

Hi Hitara. I find the fatigue of heart failure really hard to cope with at times too. I do think some of my fatigue is caused by my medication (I feel way more energetic when I forget to take it) so it might be worth your while talking to your HF nurse/GP/consultant about adjusting some of your doses? I'm on lower doses of a few of my medicines than I used to be and still get tired, but not to the same extent.

As others have said, listen to your body and try to be as healthy as possible - a good diet, plenty of rest and as much exercise as is right for you. I'm trying to follow this advice myself and am currently very frustrated that I'm not feeling so great despite all my efforts. But I've come to realise that seems to be how heart failure works. All you can do is try - it never does any harm and sometimes helps. I often feel stuck in a bit of a vicious cycle though - I build my activity up and up and up until...I can't do it any more and the fatigue gets the better of me for a few weeks. Then I need to summon all my willpower to start building up again.

There are so many things I WANT to do with my time/life, but by the time I've done the things I NEED to do, I often haven't got anything left in the tank. I imagine you are in a similar situation with job, children, pets... I guess we just need to prioritise, do all we can to be healthy and maybe learn to delegate!

[laura_dropstitch Heart Star]

Also might be worth getting your iron levels checked. Low iron levels are very common in people with heart failure. I'm taking part in a medical trial where I sometimes get an intravenous iron infusion and it really boosts my get up and go. I'm getting some iron in the next couple of weeks and cannot wait - hoping it's the miracle cure, however temporary!

[S11m]

Hi, Hitara

I have fatigue, because the battery in my pacemaker battery state of charge is low. (I am booked in to have it replaced on the 21st September).

They previously increased the pulse rate the pacemaker was supposed to maintain.